Namine
Namine Olivia Eiche was born on July 15, 2008 with a double-inlet left ventricle heart defect; Pierre Robin sequence, a condition that resulted in a regressed jaw and a partial (U-shaped) cleft palate; caudal regression syndrome (also known as sacral agenesis), which damages the growth of the tailbone and legs, also giving her clubfoot; and scoliosis.
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Garbage paper
“Moo-ooom! There’s garbage paper all over my new coloring book!” “That’s shrink wrap. Let me get that off.” “Oh. Okay. Thanks, Mommy!”
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Scary quote of the day
Despite the improvement in operative survival, morbidity associated with the Fontan operation remains significant.
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Pizza Mania
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Trip to the ER
For a couple days now, Namine has had a fever. It hasn’t been high enough to merit calling the doctor, according to her discharge papers; they say to call if she has a fever of 101 for two days in a row, and her fever has only reached 100.4. But part of the incision on…
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On fear
One of Namine’s greatest fears is getting a blood draw.
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Morning chat with Namine
I was being silly with Namine in the car on the way to the clinic this morning. “Hey you in the back seat. What’s your name?” She looked at me funny. “I’m Namine!” “How old are you?” “Five!” “Where did you come from?” She thought for a moment. Then she looked right at me. “I…
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Therapy eval
Namine’s occupational therapist came to our apartment this morning to evaluate her. Tuesday marked a full two weeks of recovery after the Fontan (which is still crazy to me). It’s time to start thinking about getting her back into the swing of things, and that means therapy. Her right arm especially needs some attention, after…
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Playing doctor
On the day that Namine was discharged from the hospital last week, before we got the discharge papers, Namine and I went to the play area. There we found (among other things) a bunch of doctor toys.
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You are my sunshine
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Special needs picnic 2013
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Mike and Namine, then and now
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We’re going home today!
Well, it’s official. After rounds this morning, the doctors concluded that Namine is doing well enough to go home. Now we just have to wait for the discharge papers. If past experience is any indication, we’ll likely be here a while yet.